Feedback

We have been trying to find a way to share your feedback on the draft with the world.

What follows is a list of links, each one will take you to a google doc with the feedback we have received so far. You can not edit these documents, however you can email any of your thoughts or feedback to us here and it will be incorporated into these documents.

We are posting feedback anonymously and have a list of contributors; doing it this way enables people to be open and honest without any concern of reprisals. We will also incorporate feedback currently provided on facebook in due course.

Clause 1

Clause 2

Clause 3

Clause 4

Clause 5

Clause 6

Clause 7

Clause 8

General and additional feedback

Where feedback has been provided on the specific wordings we have not included that here but kept it separately for the redrafting that we hope to take place in January/February time. We will also incorporate the feedback from group discussions in due course.

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16 thoughts on “Feedback

  1. Absolutely agree – equally I don’t agree the assumption to be made that older disabled people are experiencing independent living when staying in their own home without adequate support to make decisions and take part in activities they want to do to maintain their active participation in society. Again that where people chose sheltered living or something similar that a one size fits all take it or leave it offer of activities that don’t meet people’s needs or aspirations are not sufficient for people and should be outlawed. The duty for this probably has to rest with the local authority but government accountable in terms of making this achievable through adequate levels of finance to ensure delivery.

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  2. I have read this blog with a sense of deepening despair. How can it be that 30 years after we thought we had ended the scourge of institutional care and segregation, they have returned. Maybe they never really went away.
    I then fell to thinking about the closure of the institutions in the late twentieth century. That was a successful movement, even though there are remnants today. Are there things we can learn from the success of the campaign to close the NHS hospitals?

    As I read it, There were four factors which contributed to the successful deinstitutionalisation crusade.
    First and foremost there was a clear vision. Institutions were bad, community care was better. This was underpinned by slogans like an ordinary life, a life like any other. It was hard for the naysayers to fight such simple but obviously right ideas. The vision was backed by evangelical trainers – PASS and PASSING (remember those?) – which shaped the thinking of a generation of professionals.

    Second there were scandals, like Winterbourne View which galvanised public opinion, helped by interest from the mainstream media. The Ely Hospital abuse was brought to public attention by the News of the World, just as WV was by Panorama. In 1971, the Better Services for the Men tally Handicapped White Paper committed the Government to investment In community services like hostels and day centres. Now we see these as old fashioned, but then they were a great step forward. And, unlike Valuing People, Better Services set targets based on data about how many people needed these facilities. True, the targets were not met, or not fully, but this was considerably better than the vague slogans of VP.

    Third, there was leadership. Leadership from politicians like Richard Crossman who sponsored Better Services, and gained the commitment of the incoming Tory administration to the vision set out in Better Services. But also leadership from academics like the tireless Wolf Wolfensberger, Jack Tizard, and from the influential think tank, the Kings Fund which produced reports like ‘an ordinary life’, and leant its weight to garnering support for such ideas as people living in ordinary houses in ordinary streets. There was leadership from professionals in organisations like Campaign for Mentally Handicapped People later Values into Action, and the Association of Professionals in Mental Handicap. And there was leadership from the grassroots, from parents organisations, foremost Mencap’s predecessor organisation, but also Kith and Kids, the families who founded the Home Farm Trust in Gloucestershire, and MacIntyre in Bedfordshire, both in the mid 1960s, pioneering different forms of living for their sons and daughters.

    Finally, there was money. Moving from one type of service to another requires investment to fund both while the transition takes place. You cannot close a hospital overnight, or even a ward. They have to run temporarily half or quarter empty, while new homes are found for people. And until the shortage of money was addressed progress was very slow. The double funding was never intentional either. It was a happy accident of a loophole in the Social Security budget which allowed. Hospital residents to claim housing related benefits. Once that happened, in the 1980s, hospital closure speeded up.

    Now, which of these factors is present today? We can tick the scandals box, for sure, but I am unsure about the rest. The LB bill is a start, but does not have the simplicity of an ordinary life as a slogan to rally around. Leadership is there from parents in some parts of the country, like Oxfordshire. But it is fragmented. I see no coherent coalition of academics, think tanks and professionals as was discernible in the late 60s. And while Norman Lamb has done his best, I believe, it is hard to see him as more than a lone brave voice in a sea of indifference. Nor do I perceive a groundswell in the professions. I would be hard put to name a nurse or even a psychiatrist in the front rank of voices supporting the LB Bill. And I look in vain for even a mention of Winterborune, Conor, or Calderstones in the NHS Trade Mag, the Health Services Journal. As for money …. Despite the enormous cost of private hospitals, the chances of local authorities finding double running costs at a time of austerity is probably as likely as a candle surviving the gale that is blowing round my house as I write this.

    Of course, there is one big difference between now and then, and that is social media. Sara’s blog has kept the campaign alive. And there are celebrated examples, like the sell off of the Nation’s forests, where social media has turned the tide.

    So where do we go from here?

    Call me old fashioned, but I believe that without a broad based coalition we have no real chance of changing things on a significant scale. So my best idea is to seek to bring together some of the leading voices in the sector, to try to reach agreement on a simple reforming formula which we can then use to galvanise support through social media.

    How about it? Are we up for this? If so I will work with you to make it happen.

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  3. Very interesting thoughts, Jan, thank you. I so agree with the despair too. Do you have any thoughts about how to go about building a broad based coalition? I wonder if the ingredients from the 70s have been superseded by charities too big/invested to really want change and a lot of political infighting really, neither of which is helpful. We just want to do whatever works.

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    • [REPLY FROM JAN WALMSLEY]: How to build a coalition? I’m no expert, but there are people, like Philippa Russell, and organisations like yours and OXFSN which could be the core. I have some connections like Simon Duffy at the Centre for Welfare Reform whom I would seek to engage, not to mention academics, including retired academics like Oliver Russell (no relation as far as I know, but he was a psychiatrist).

      I appreciate your cynicism about the big charities, and don’t disagree, they are compromised by being providers as well as campaigners. But that happened before. The big not for profits in the 1950s and earlier were aligned with institutional care and dominated by quasi professionals, it took a grass roots parents’ movement like yours to change the script. The other point I want to make is that there are small embattled groups of families and others fighting Local Authority cuts. They are fragmented as far as I know, certainly the one I am in touch with in Haringey want to make links with others. My view is that somehow the two need to meet, you have common cause of protecting the gains we made over the past 30 years, even if your immediate priorities are slightly different.

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    • Removal from MHA definitions vital. Autism & Challenging behaviour (which becomes a more bizarre label the more you think about it) are not mental health definitions. People who genuinely have Mental health needs would be able to be treated under other existing definitions. The MHA is routinely abused to incarcerate people that professionals do not know what else to do with. This would help people think differently.

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